5 things we’ve learned about finding a good college for a son with DMD
How we've determined which schools are inclusive and accommodating
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I always assumed my three sons with Duchenne muscular dystrophy (DMD) wouldn’t get to experience college. I knew it would depend on their health, disease progression, and openness to making it happen, as well as all the typical things like good grades and test scores.
However, as my boys — Max, 17, Rowen, 14, and Charlie, 12 — have grown, it has become apparent that college is an option, especially for Max, who’s already begun the process. It may look different for each of my sons with DMD, but based on our first experience of preparing to send a son with Duchenne to college, the following are five things we’ve learned about finding and choosing a school.
1. Visit more than one
We picked five colleges we wanted to visit: a two-year community college, two small, private, four-year schools, and both a medium and large public university.
In the beginning, Max didn’t know what he was looking for. As I mentioned in a previous column, Max didn’t dream of attending college because he was never sure he could. So we picked a variety of sizes and types to help him figure out what he did and didn’t like about each.
Max recommends that you “don’t count out a school before you visit.” His top choice is a university he didn’t think he’d like but fell in love with once he saw the campus and met the people.
2. Don’t limit your choices to schools close to home
This advice came from a good Duchenne mom friend of mine. I’d assumed Max couldn’t go to college far from home because he’d be unable to live there alone. She told me not to limit him, so we will let Max decide where he wants to go, and then figure out the logistics.
Max has yet to decide, but he’s considering living on a campus 90 miles from home. I am so glad we didn’t limit our choices based on distance. I love that he may have the typical experience of living in a college dorm.
3. Not every college has ideal accommodations
I assumed we would find appropriate accommodations everywhere we looked, but I was wrong. Max was unsure if he wanted roommates, so he sought a single room and a private bathroom. But not all colleges offer those options, especially for first-year students. He would have to live with older students instead.
As a disclaimer, some of the schools we toured failed to schedule us a meeting with the campus disability coordinator as we’d requested. If we had met with every disability office, we may have found more accessible options.
Unsurprisingly, Max’s top picks are the schools where we met with the disability coordinator. It sent the right message to us. Through the tours, he found that he likes the suite style, where he’d share common areas with roommates but have his own bedroom and a more private bathroom setting.
4. Talk to students with disabilities
Disabled students living on campus will have firsthand knowledge that tour guides, disability coordinators, and admissions counselors do not, simply because they have lived experience.
For example, Max talked with a former student who has dyslexia. Yes, his needs differ significantly from Max’s, but he could attest to the support he received and how easy it was to work with the appropriate office to ensure accommodations. That conversation went a long way.
5. Pay attention to the people
On some campuses, everyone walked around wearing AirPods and looking at their phones. At others, everyone we passed was engaged and said hello, professors and students alike. At Max’s favorite campus, people held the doors open for him without being asked. The vibe just said inclusion — and that matters when you look different and have different needs from most others on campus.
We can get Max moved into college by next fall, but first we need to figure out financial aid, find personal care assistants, and get answers to a growing list of questions. But in this Duchenne life, worrying about those things is a win.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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